In Our Care

iStockphoto

“Something’s wrong,” the camp nurse says on the phone.

Our 20-year-old son Mickey had left for sleep-away camp eight days earlier. He’d been happy and healthy. But for the past two days, she reports, he has been lethargic. Not eating. Throwing up. Telling them his side hurts.

“We’ll meet you at the hospital,” I say. My husband Marc and I fly up the highway. “Did you bring a copy of the guardianship papers?” I ask him. I don’t want anyone challenging us about our right to make medical decisions for our adult son.

“Where they always are. In my wallet.”

Mickey must be so scared, I think. I picture raucous scenes from television medical dramas. Screeching ambulances. Crash carts. People shouting. Emergency roomscan be frightening for anyone, let alone someone with sensory and communication issues.We burst through the hospital doors, and find Mickey on a gurney. “Hey Mom. Hey Dad.” He sounds surprisingly chipper. “I was throwing up.”

The doctor on call introduces himself and motions us down the hall. “The good news is that it’s not an intestinal blockage.” He points to a round blob on the computer screen. “But that is a kidney stone.”

“Wow,” I breathe. “That’s supposed to be incredibly painful.”

“Yes,” he agrees. “I’m surprised he’s not writhing in pain. If I had a stone that size I’d be doubled over.”

The nurse appears. I like that she speaks directly to Mickey instead of us. “I need to run an IV line,” she tells him. “It won’t hurt, just one little stick and it’s done.”

Mickey balks. “No stick!”

I tense, remembering how Mickey had once slugged a doctor who’d tried to give him a shot.

“Honey, this way they only have to stick you once,” I tell him. “Then they can do a blood test and give you medicine to take the hurt away. Here, squeeze my hand. Don’t look.”

Still, he yowls, watching the needle penetrate his arm. “The faster we do this, the sooner we take you home,” Marc reminds him.

Testing shows he is dehydrated. The nurse sets up a saline drip, adding a pain killer and anti-nausea medication. Two saline bags and several hours later, the doctor says he feels comfortable discharging him. “But it’s not over,” he cautions. “You’ll need to follow up with your doctor tomorrow.”

At home that night between bouts of nausea and heaving, Mickey asks plaintively, “Am I going to die?”

The next day our pediatrician sends us to a urologist. We sit in a crowded waiting room nearly two hours as Mickey grows increasingly belligerent: “No doctor! I’m out of here!” A pretty nurse appears; Mickey perks up. “What’s your name?” he asks. She directs us into the doctor’s office; finally, a tall man strides in. Mickey lights up with excitement. “You look like my rabbi!”

The doctor smiles. “But I give shorter sermons.” He bends over a microscope. “There’s blood in his urine and he’s still dehydrated. Mickey, how are you feeling?”

“Great!” Mickey says cheerfully.

Great?

People with autism don’t always show typical pain behavior, I remind myself. I remember a summer day long ago; Mickey a sturdy 3-year-old, had been running happily down a concrete path when he’d tripped. I’d run to pick him up; his legs and arms were scraped raw. Most kids would have been shrieking. But Mickey merely brushed away the gravel embedded in his knees, and resumed running. He seemed stoic even when he had three wisdom teeth extracted. When he says something hurts, we know it must be bad.

And this is bad. Despite heating pads and medications to ease the pain and help the stone pass. All week he is rocked by waves of nausea and retching. Yet only once does he say plaintively, “Make the hurt go away.” Is there anything worse than seeing your child in pain and feeling helpless to relieve it?

“The more water you drink, the faster the kidney stone will come out,” we tell him repeatedly. One evening I hear him in the bathroom, forcing himself to burp again and again. “What are you doing?”

He puts a hand to his throat. “Getting rid of the stone.”

“It can’t come out that way,” I say. “It will come out when you pee.”

“Be on the lookout for that stone,” the urologist’s nurse reminds us. “It could be the size of a grain of sand. Or even a tiny pebble.”

Finally, two days before he is due to have a procedure to blast the stone with shock waves, we catch a fragment that looks like a flax seed in the mesh strainer they’ve given us. We bring it to the doctor. He sends us for another X-ray. The stone in the ureter is no longer visible.

“This could have been so much worse,” Marc and I reassure each other. Mickey has been a trooper through the ordeal; as always, he is resilient. It is over—for now.

Except that there is another small stone floating in his kidney that we will need to monitor.

But lurking beneath our brave fronts is the fear that never goes away. Someday he will live apart from us; who else will ever watch him as vigilantly? Recognize when he is in pain? Know how best to reassure and comfort him? Advocate for him?

Wow it's like every parents fear to loss or to not help but wonder who will look after him after me? My son Sam is 7 and we share a very strong bond and I understand him so much and I always fear exactly what you have mentioned in the last paragraph. :) I guess we could only smile and enjoy our children and live for the moment. Thanks for sharing

This is very powerful, I am fighting back tears. As usual, Liane has so honestly & eloquently described their experience. Thanks for sharing your deepest feelings with us, Liane! I will carry this story with me for a long time....

In more ways than one. Raw and true--as always. What a trooper Mickey is--and his wonderful parents. All of us who are parents ask the same questions raised at the end--but there is a an added degree of pain and poignancy for Mickey's parents. Sending prayers and love, as always--Bari

These days, when one hears “Healthcare,” political strife is often the first thing that comes to mind.

We have previewed and commented on the "How-To" videos below. Some of these are simple; others are fairly complex. Refer to these yourself, or use them with your adult child or student to help teach and generalize skills. Please note that some videos may contain skills which require support or training. You must determine which are appropriate for you, your adult child, or your student to use safely. Also note that as these videos come from other websites, they may contain pop-up ads. Click on an icon to see category index. Click here for full index.